Sunday 1st May
Claire and Joseph drive in early after a day out at Penshurst and a night at home. The plan is for Claire to sit with Josh while Joseph and I explore the Capital, then vice-versa tomorrow. We opt for the London Film Museum on the South Bank and spend a good 90 minutes browsing models, costumes and props from movies like Batman, Superman, Night at the Museum and Harry Potter. Highlight of the morning is our lightsabre duel which Joseph really flung himself into. The Force is strong in this one. After our fight, we play football in the sunshine under the London Eye, watch a couple of street performers perform, stumble across 3 young street runners somersaulting down concrete steps and stroll along the new mini man-made beach by the Thames. Josh is sitting up watching Man Utd lose to Arsenal when we return. The whole family descends on Covent Garden at Josh’s request and we end up watching an acrobat who used to work for Cirque de Soleil going through his paces which is entertaining enough for us to part with a few gold coins. As a rare treat for Josh, we stop at McDonald’s on the way back and whilst he only manages one chicken nugget and 5 fries, the look on his face had to be seen to be believed. He’s been awake for 4 hours today, a real improvement, but still retires to bed with a headache as soon as we arrive back. Joseph and I have an early night back at the house, although Claire isn’t quite so lucky with his nibs waking at 9pm to watch Phineas and Ferb and ask for cheese. Let’s hope it doesn’t give him nightmares !
Monday 2nd May
Bizarrely, it’s Joseph who has a nightmare and wakes at 3am. I struggle to get back to sleep and by the time I do, sunlight’s flooding through the window and Joseph’s keen to rise and shine. An early game of footie in a very windy park sees us bombarded with twigs and caught in the middle of a blossom blizzard that sends the pollen count through the roof and leaves us sneezing with our eyes streaming, Claire had the same problem yesterday when she went to lunch nearby. She and Joseph set off early for St Paul’s but Joseph decides he’s not feeling well enough to climb to the dome and they return with their tails between legs. With Josh asleep we sit in the sunshine and enjoy a lovely family lunch at Giraffe in the Brunswick centre, although of course we’re only half a family. We wake Josh up at 3pm and give him a quick, but much needed bath. He plays FIFA 11 with Joseph then asks for pizza which I run off to cook. Remarkably he’s still awake when I return but Joseph and I have to leave as he tucks in. The holiday’s over and hopefully a few things will start to fall into place over the next few days. With two long weekends in a row Great Ormond Street has pretty much ground to a standstill and, even though our lives have been on hold for 3 years, we’ve found the last fortnight very frustrating...
Tuesday 3rd May
‘How do you get up from an All Time Low ?’ The lyrics from The Wanted’s big chart hit pretty much sum up how we’re all feeling at the moment. I try and blank things out today by working in the garden, finishing the patio off with the jet wash and then hoovering up the blossom from the deck, but it doesn’t help. When, oh when will things change ? It’s been nearly 4 years since Josh became seriously ill and our lives went on hold and we’re still no wiser or nearer a solution. Josh is even more tired than usual following his day out and sleeps from 5pm yesterday until 3pm today. There’s a Lumbar Puncture planned for tomorrow, but it’s being done by one of the BMT team which doesn’t fill us with hope, as they’ve failed to draw fluid the last couple of times. Gastro have spotted something in the results of his biopsy but aren’t sure what it is or what it means – hopefully it’s nothing. They will consult with UCLH this week and push for his endoscopic thingie to happen asap. Claire has a chat with the BMT team who have no idea what to do next. They’re looking to sit down with immunology in the next day or so and see if they have any ideas. The LP may tell us something, but we’re really concerned about Josh at the moment as he’s struggling to do anything other than sleep. His crippling headaches come on so quickly and for no apparent reason. He started crying out again today and when he tried to stand up for a spot of physio and suddenly vomited. Claire thought he was going to fit again. Thankfully he didn’t. When I catch up with her while Joseph’s at Taekwondo, he’s watching the new Narnia movie on DVD and more settled, but for how long is anybody’s guess...
Wednesday 4th May
Josh lost his lumbar puncture slot at the last minute today due to an emergency case, which is fair enough but far from ideal. We’re unlikely to get another spot this week, which is a real setback. I spend the morning queuing at the local dump with a car full of all the grass cuttings, branches and weeds we’ve accumulated over the last few weeks. Why Bromley council doesn’t have a garden waste collection, given how green the area is, I’ll never know. Just before setting off to cycle to school to pick up Joseph, I manage to slip on a bottle of cleaning fluid on the cellar steps and go flying. Luckily my head, arms, legs and back bounce off the wooden stairs and slow me down before I hit the concrete floor. My guess is Claire’s finally twigged that I’m worth far more dead than alive and started leaving booby traps round the house to collect on our life insurance. I’ll probably find a King Cobra hiding in the laundry basket next. Thornton’s have reported a huge drop in profits this Easter which they’re putting down to the hot weather, but it doesn’t seem to be stopping Joseph slowly munching his way through his enormous pile of eggs. In between mouthfuls of chocolate, we enjoy an afternoon of football and practice his spelling in the garden, which for once isn’t up to scratch - more of a spelling D minus, than a spelling bee. He’s been complaining of headaches for the last few days and hasn’t quite been himself, so perhaps he’s just out of sorts. When Claire calls I’m in a deep sleep next to Joseph in bed and too tired to talk. I manage to listen and she tells me Josh was a bit more himself today, even though he slept through most of it again.
Thursday 5th May
The sunshine’s nowhere to be seen this morning and it’s raining by the time I hit London, having cast my anti-AV vote. Josh is up and waiting for me when I arrive at GOSH. He’s looking okay but is enormous, having put on lots of weight over the last couple of days. Again, the question has to be ‘Why ?’ A play specialist plays Monopoly Street with him while Claire and I sit outside a pub we used to frequent over 20 years ago when we were dating. Tapas is on the menu and we manage to excite our tastebuds if nothing else. Much to my surprise Josh is still awake when I return and we watch Man Utd stuff Schalke 04, which is their name not the scoreline. When his teacher arrives , he asks me to stay in the room in case he gets a headache. He manages for 30 minutes or so then decides he needs a sleep before physio. Claire had arranged for another play specialist to sit with Josh before she left, and I nip out for some fresh air and supplies while she sits beside his bed doing paperwork. Seconds after returning, I’m told we have a possible MRI spot and wake Josh to get him ready. Despite the best efforts of the hospital chaplain to slow us down by suddenly appearing in the room and not understanding the words ‘Now is not a good time’, we make it downstairs for his scan just in time. There’s no metal allowed in the room, so Josh has to walk the last few feet on his own which he just about manages and I have to remove my hearing aid, which I pop into an empty wee bottle for safe keeping as there’s nowhere else to put it. It’s tempting fate, but I get away with it. Josh does so well in there, given how noisy it is and the fact he has to keep still despite having terrible itching all over his body – possibly due to his skin GVHD coming back now that his steroids have been lowered. I remembered to bring a DVD down for him to watch but forgot to bring a book for me, so I have to sit there for an hour with ear plugs in watching ‘ Open Season 2’ upside down on the flatscreen TV. Hard to say how good it was from that angle and with no sound, but Josh said he enjoyed it. He’s itching frantically as I wheel him back to the ward and we run a bath straight away. He starts watching his dance programme after that, but needs piriton for his itching soon after as it just won’t go away. The drug makes him tired and he asks to go to bed, but wakes 15 minutes later, just after I’ve put everything away, to watch the rest of the show and consume some cheese. He sleeps again after that, even though he’s itching like crazy and when he gets up for a wee later in the night I notice blood on his sheets from all the scratching.
Friday 6th May
It’s a better night than expected, although Josh remains restless and needs piriton again to calm his skin down. Around midday, one of the BMT doctors gives me a thorough update on what’s been going on. They are waiting until all the tests are done before coming back with a proposal. They will be looking to pursue a number of new and experimental ideas having drawn a blank at every turn so far. He is due his scope at UCLH on Tuesday at 8am and his delayed LP is down for Wednesday. They will widen his pancreatic duct and perform a biopsy at the same time as the scope. It’s not ideal sedating him two days in a row, but we need the results of both tests as soon as possible in order to move forward. One of the key issues facing Josh would appear to be that his Thymus gland is not producing any new ‘naive’ lymphocytes. Basically the Thymus is located in your chest, just below the neck and it’s only known function is the production and education of T-cells or lymphocytes, as we normally refer to them in the blog. At the moment all his lymphocytes are ‘mature’ ones from his donor. His new stem cells should have started to migrate to his Thymus by now, where they’re changed into lymphocytes which then go about their business with childish enthusiasm, attacking and remembering any viruses they come across. There are potentially ways of stimulating the Thymus, but they have so far only been tested on about 200 adults worldwide so there would be a risk involved in going this way. Other options will be discussed and weighed up, then we will have decide which way to go. There is still no explanation for his low albumin levels, his headaches or his tiredness, although certain drugs such as Septrin have been stopped just in case they are contributing. There will be tests done at a later date to determine whether his body is producing its own natural steroid hormones or corticoids. All of this sounds impressive but leaves us none the wiser. His MRI and EEG suggest nothing new and no sign of encephalitis to speak of. So what is wrong with Joshie ? He sleeps through the meeting, wakes to play on his iPad with me for 30 minutes then sleeps some more. I have an hour off today and sit in the sun enjoying a medium steak with garlic butter and stink the room out on my return. Josh wakes for physio and does his best, but it’s a struggle to stay on his feet let alone kick a ball, He eats a slice of pizza which I cook at the house and lets me read to him, but there’s a delay getting his oral morph and he’s soon screaming in pain. Stroking his head seems to work and, as he finally nods off, I send the nurses away as he needs rest more than he needs his observations done for a little while...
Saturday 7th May
My first waking thought is generally ‘Which bed am I in ?’ I expect life was pretty much the same for Russell Brand before he married Katie Perry, but my life isn’t quite so exciting. Far from following in the legendary swordsman’s footsteps, I’m generally in the hospital bed next to Josh or my own bed next to Joseph, but the last few weeks has seen my sister’s house and the London flat join the list. The only notches on my bedposts are woodworm or dry rot. Groundhog day continues with Josh asleep most of the time. He’s very excited about the start of a new Power Rangers series on Nick and kept telling the nurses about it all night every time he woke up. Today he occasionally opens his eyes to ask if it’s on yet , only to close them again when it’s not. He was up for 30 minutes around midday, but not even the promise of new apps on his iPad kept him from going back to sleep. I’ve started using the two steroid creams the Head of Dermatology gave us a few months ago, but it’s probably time he saw Josh again, as I’m not convinced it’s GVHD this time. A weekend doctor pops in to ask how his diarrohea is, which completely baffles me. She then says we need to reduce his fluid intake which also makes no real sense at the moment and isn’t practical. It’s a case of papering over the cracks anyway, given that nobody knows why he’s leaking fluids or even where they’re leaking to, as his feet aren’t swollen at the moment. Our nurse has a word with a different doctor and we decide to ignore everything she said - I can always stick a bag on his Gastro peg if it looks like he’s drinking too much. A stroll round the Brunswick, a couple of hours work and checking the football scores on my Blackberry fills my day until Power Rangers at 4.30pm. Josh wakes immediately and is ecstatic. I manage to keep him awake until Dr Who which he also really enjoys. He fades soon after that and complains of a headache, but I take a punt that it’ll go when he lies down and put a little water down his line instead of oral morphine. Ah yes, the good old placebo effect. He wakes several times in the night as usual, but at 3am I need to patch his Hickman line up as it’s started peeling off. Hardly surprising as he’s shedding enough skin to make Tara PT a hundred new noses and still have enough left over to build a full-size Michael Jackson.
Sunday 8th May
Claire very wisely and eloquently said the other day that we all thrive on structure - but also on change. She went on to add that we have neither and it’s true. No weekends, no bank holidays, no holidays full stop, no goals, no dreams or ambitions. Very often no mornings, afternoons or evenings – just one long, hazy blur that’s dictated by medical procedures and other people’s timetables. The bottom’s fallen out of our world and we just exist from day to day. Lord knows what it’s like for Josh or how he manages to keep his sunny disposition all the time. His face still lights up at the thought of drinking cold water, but there’s little else for him to smile about at the moment as tiredness means he rarely fits anything else into a day. Claire and Joseph arrive just before 1pm, by which time Josh is up and having a bath. We coax him out and sit in the park eating sandwiches from Pret. We can’t coax him into joining us, but he tucks into mama’s meatballs when he’s back on the ward where we all play Uno and Pictureka together. Josh is desperate to watch Power Rangers with Joseph so we delay leaving. Minutes before it’s due to start our TV goes the same way as several others on the ward as the whole system needs rebooting. Josh is upset, but cheers up when they watch Batman cartoons together instead while Claire and I try to work out diaries for the next few weeks - including who gets custody of Joseph for his birthday party. It’s nearly 7pm before we head off home. Josh has been on top form for nearly 7 hours and only complained of one headache, which went quickly after morphine. It’s a nice end to a difficult week for him but it’s far too early to think he’s turned a corner. Ask us again in a month or so.
